Archive for the ‘DNA’ Category

For decades, hospitals have conducted blood tests on newborns, checking babies for various conditions, treatable and not. Today’s less costly tests, genomic research, and technological advances, coupled with differing policies across states, worry some privacy and ethics advocates.

Whereas some states allow parents to opt-in for testing, others have an opt-out approach. Critics argue parents have little to no say in whether this data is collected, where and how long it’s stored, and what organizations do with this information. Lower genome testing costs sparked debate about researchers’ right to use this information; who should learn of infants’ chronic conditions and when; and the type of data government, researchers, payers, or healthcare providers can cull. Other concerns surround the storage and transmission of data that’s not de-identified and its potential theft. […]

In May, Minnesota Gov. Mark Dayton signed a law allowing the state to indefinitely store blood spots for future research. Parents can opt out. In New York, parents can decline testing for religious reasons, said the Wadsworth Center, NY Department of Health, which screens the state’s newborns for more than 40 inherited metabolic conditions.

The Economic Timesreports that India is considering the creation of a data protection agency, which would seek to protect privacy:

NEW DELHI: The government plans to set up a Data Protection Authority (DPA) that will rule on issues around privacy invasion and impose penalties on violations, moving strongly towards safeguarding individual privacy and defining invasion of privacy offences.

The authority will “investigate any data security breach and issue appropriate orders to safeguard security interests of all affected data subjects in respect of any personal data that has or is likely to have been compromised by such breach,” according to a draft Right to Privacy Bill that was seen by ET.

In the draft prepared for approval of a committee of secretaries, the government has proposed that all Indian residents shall have a right to privacy. Restrictions can be imposed only in accordance with the law and to meet specific objectives. Further, more extensive safeguards for privacy will override the Act in case of a conflict. Read more »

PBS’s “Nova Next” reports on the expansion of DNA databases, and the biometric data collection has implications for privacy rights:

In June, the Supreme Court ruled that it is constitutional to take DNA samples from people who have been arrested for serious crimes—without a warrant, much less a conviction. Like bits of DNA taken from people found guilty, those samples can be entered into a database and used not only for the case at hand, but compared to other crime scene samples, connecting the arrestee to past crimes. […]

Today, 28 states and the federal government already collect genetic samples from people arrested for serious crimes (mostly felonies, though some jurisdictions include certain misdemeanors as well), while the remaining 22 states only take samples from people convicted of those crimes. The recent ruling is likely to have wide-reaching implications—both for states that already have databases and for those that don’t, yet. […]

Depending on whom you ask, DNA databases herald a future of either lower crime or less privacy. Many of the arguments echo the Supreme Court ruling and dissent: Proponents say the databases help police catch dangerous criminals faster and identify offenders who had eluded detection, thus providing a big pay-off for each law enforcement dollar. Others object to the databases on the grounds that they violate privacy by storing genetic data, are an inefficient use of limited resources, or are likely to encompass more and more people—perhaps including those never even suspected of a crime. Read more »

Organizers of the American Gut Project are recruiting thousands of people to donate their microbes to science — along with lots of personal information — to help researchers learn more about the trillions of microbes that inhabit the human body. […]

A few weeks later, an envelope arrived in the mail with an instruction sheet and a long two-pronged cotton swab. After spending a week carefully logging the details of everything I ate and drank, I used the swab to collect a fecal sample and mailed it off for analysis.

While I was waiting for the results, I spent some time talking to bioethicists about some concerns I had heard about participating in these projects. Read more »

The National Institutes of Health has issued a notice “seeking public comments on the draft Genomic Data Sharing (GDS) Policy that promotes sharing, for research purposes, of large-scale human and non-human genomic data generated from NIH-supported and NIH-conducted research.” Comments are due Nov. 20, 2013. Here’s more from the agency’s public notice:

Overview of the Policy

The draft GDS Policy describes the responsibilities of investigators and institutions for the submission of non-human and human genomic data to NIH (section IV) and the use of controlled-access data (section V). The Policy also provides expectations regarding intellectual property (section VI).

When data sharing involves human data, the protection of research participant privacy and confidentiality is paramount, and the Policy reflects NIH’s continued commitment to responsible data stewardship, which is essential to uphold the public trust in biomedical research. The draft GDS Policy, like the GWAS Policy, includes a number of provisions to protect research participant privacy (see section IV.C). For example, prior to data submission, traditional identifiers such as name, date of birth, street address, and social security number should be removed. The de-identified data are coded using a random, unique code to protect participant privacy. Read more »

Here are some recent stories about privacy and biometric identifiers, such as facial characteristics, irises or DNA. CNN reports that schools are using iris scans as IDs. The Washington Post reports that law enforcement officials are tapping into states’ photo-ID databases. The New York Times reports that local police are creating DNA databases, sometimes including biometric data from victims of crimes, not suspects. (Back when I was at the Electronic Privacy Information Center, I worked on an amicus brief (pdf) for a case concerning DNA dragnets, Kohler v. Englade.)

Kids lose their school IDs but they don’t often lose their eyeballs. That’s one of the reasons why a growing number of schools are replacing traditional identification cards with iris scanners. By the fall, several schools — ranging from elementary schools to colleges — will be rolling out various iris scanning security methods. […]

South Dakota-based Blinkspot manufactures iris scanners specifically for use on school buses. When elementary school students come aboard, they look into a scanner (it looks like a pair of binoculars). The reader will beep if they’re on the right bus and honk if they’re on the wrong one. […]

In the next year, industry insiders say the technology will be available all over– from banks to airports. That means instead of entering your pin number, you can gain access to an ATM in a blink. Used in an airport, the system will analyze your iris as you pass through security, identifying and welcoming you by name.